NEWBIE: Needs advice
- Thread starter W84Me
- Start date
Help Support Valve Replacement Forums:
W84Me
Active member
- Joined
- Jun 24, 2023
- Messages
- 35
No, I did the aortic valve replaced labelled as "isolated AVR".
pellicle
Professional Dingbat, Guru and Merkintologist
I could be wrong here, but I think you missed @LondonAndy's point
Point as I see it was this: you already drew the short straw (for whatever reasons, I just saw my first example of valve replacement due to car accident) and you now no longer are in the "you're pefect" situation with "only the harm you do to yourself by drinking, eating badly, no exersize, drugs (including steroids) ..." and because of modern advances you are in the lucky position of not "being dead by a slow horrible wasting" (which is what used to happen with aortic stenosis).
Consequentially you lucked in (by being born in the era of OHS) and now will quite likely have a good 10 to 20 years of survival you would not have otherwise had.
I didn't read the assessment because I never read that stuff anymore. I stopped reading it when I started seeing that what I did from now on has the biggest indication of my good outcomes. PLUS there are far too many other issues which are not counted in that sort of stuff. That stuff is for actuaries who are trying to tweak an insurance policy to make a profit, not assessments of you.
To me there is only one thing you need to be clear about: will I pick mech or will I pick bio.
After that its just understanding what you have to do with that choice to maximize outcomes and doing that.
The rest is "gunning your engine" researching stuff with your wheels spinning bogged in the mud.
The choice is pretty simple as I see it.
So as a piece of advice I suggest that you ask yourself what you are reading and why.
Personally I didn't research 1/100th as much pre surgery as I see people here doing. I did most of my research after my 3rd OHS to learn about warfarin.
HTH
PS: the more I've learned about valve and valve choice I find the more I see the wisdom in the decisions made for me on the first two OHS and the more I reconcile with good simple summary I got from my surgeon when considering my options for the 3rd.
I omitted saying above (phone call in middle) was that some people do research as an avoidance behaviour.
Last edited:
Superman
Well-known member
There’s also just plain analysis paralysis. Can’t / don’t want to make a decision so we keep coming up with one more question to find an answer to.
Thanks! The usefulness of the background information is pretty clear
ATHENS1964
Well-known member
- Joined
- Oct 19, 2019
- Messages
- 503
In my case things were easy, I had decided a long time before they told me about surgery that I wanted a mechanical valve, I had difficulty choosing a surgeon and the two I had were in the same hospital and both very good and recognized. One is a professor of cardiac surgery at the university in Switzerland and the other trained at the Cleveland Clinic.
I was sure both of them would do the surgery well, but I chose the one I felt more comfortable with.
I told him that I don't care if he makes a small or big incision, just do what he has to do and he told me from the beginning that he will do a big sternotomy because there were anatomical limitations for my body type.
When it came to the discussion about which valve he told me that he is not negotiating about which one he will put in. He did not accept that I should indicate to him what I wanted, but what is right for him to put in.
And he explained to me that he is also trained with STJ, on-x, AST, Livanova, etc. He would simply decide when he had already made the incision and the reason he told me is whether he will change the aorta or not. My aorta was 41mm in size and if he would place it Supra-Annular or Totatally Supra Annular
(see photo)
Since you have already decided on a mechanical valve and found the surgeon, my advice is to let him do what he needs to do and you know he is doing well.
I was sure both of them would do the surgery well, but I chose the one I felt more comfortable with.
I told him that I don't care if he makes a small or big incision, just do what he has to do and he told me from the beginning that he will do a big sternotomy because there were anatomical limitations for my body type.
When it came to the discussion about which valve he told me that he is not negotiating about which one he will put in. He did not accept that I should indicate to him what I wanted, but what is right for him to put in.
And he explained to me that he is also trained with STJ, on-x, AST, Livanova, etc. He would simply decide when he had already made the incision and the reason he told me is whether he will change the aorta or not. My aorta was 41mm in size and if he would place it Supra-Annular or Totatally Supra Annular
(see photo)
Since you have already decided on a mechanical valve and found the surgeon, my advice is to let him do what he needs to do and you know he is doing well.
Attachments
W84Me
Active member
- Joined
- Jun 24, 2023
- Messages
- 35
Actually I have not completely committed to anything yet since I won't meet the surgeon till July 20. Your points are well taken but one has to also realize that many times doctors propose what they have been doing for awhile instead of what could be more sensible between the mechanical/tissue option. What I have gathered so far is that the mechanical (at 58) makes more practical sense albeit needs lifetime maneuvering whereas tissue frees one from that but provides a guaranteed redoing of the surgery down the road when I will be older and weaker. On the face of it all, mechanical makes a stronger case. But then I am open to the input of the surgeon in determining the trajectory.
As noted earlier, I will post the conversation with the surgeon here and benefit from the enriched experience of real people who are living it real time instead of a surgeon's viewpoint alone.
As for the surgeon, I don't know him at all. The fact is that I was sent to him by the cardiologist who analyzed the echocardiogram and decided that I am suffering from severe aortic stenosis. Add to that mix, I did not know this cardiologist either. So practically I am flying blind with these cardiologists relying mainly on their reviews. I have no way of telling their competence since this heart problem is the very first time I will be hospitalized. Never had any health issues to know the merit of a doctor let alone a cardiologist.
The operating surgeon that I am seeing (for the first time) on July 20 is Michael Moulton. Maybe people here have more resources to determine his suitability.
As always, thanks to you all for letting me surround myself with your informed knowledge.
P.S.: Tomorrow (July 10) is the cardiac catheter test.
Regarding your surgeon I have a few things you may want to consider. I am not endorsing nor discouraging you from your decision, only adding topics to think about.
1. Where does the institution rank nationally? It takes an entire team of surgeons, anesthesiologists, ICU personnel, etc. to consistently perform together for outstanding results.
https://health.usnews.com/best-hosp...l-center-6660005/cardiology-and-heart-surgery
2. Look at education and years of experience. Your surgeon was trained at highly academic institutions no doubt. It's unclear to me the volume or complexity of cases he saw along the way. It appears that he has been conducting surgery for about 20+ years which is a strong positive IMHO. His fellowship began in 1999 so I'm guessing 20+ years including fellowship.. Ask him how many procedures he has conducted.
3. Is the surgeon published and if so were they the lead authors, what were the topics of the publications, and how do they relate to your case. Sometimes they a re published it areas pretty far away from you own case. I need to add a caveat though. Just because a physician is highly published or not doesn't always indicate excellent practical experience.
4. Word of mouth reputation. Ask the echo tech, ask the cardia cath lab people, ask the CT tech, ask anyone you come across. Its amazing what you find out.
5. I will state the obvious but personal feel for the person is also important. Did they cover everything you need to know? Did they pull up the imaging and explain exactly what they plan to do and accomplish in surgery? Are they available for follow-up questions? Did you have a good experience with the entire team?
6. Obtain a second opinion if possible. Look for differences in their approach.
7. Lastly, are you willing to travel for your surgery and will insurance cover the procedure. I think you will find cases on this forum where people have travelled hours to have their surgery at Mayo, Cleveland Clinic, Mount Sinai, etc.. It is inconvenient, but you can fly or travel after you are released from surgery. If all goes well you are not bedridden. Quite the opposite. The more you work at walking the faster your recovery.
These points are not intended to give you anxiety; quite the opposite. At the end it will be up to the team so you just need to be comfortable with your choice. At some point you will need to let go. No analysis paralysis as was mentioned earlier.
I wish you the best of luck.
slipkid
Well-known member
Best of luck with that procedure. Can be an uncomfortable hassle but should not be a big deal or anything to be afraid of. Saying that I am not particularly looking fwd to ever having another one but I don't even like going to the dentist and getting my teeth cleaned!
Just wanted to say that I've learned very painfully over the course of my life to never trust anything a Dr says as gospel. Have been burned way too many times. Once specifically with an echo reading just a few years ago post OHS where my bicuspid calcified aortic valve was replaced with an On-x yet that echo said I had aortic stenosis, calcified fatty deposits on my tricuspid aortic valve, and other nonsense like pressure gradient readings across the valve which were way too high and out oof the target documented ranges for my On-x valve.
Of course the cardiologist, and my GP, didn't even catch these errors until I pointed them out (and even then the cardiologist didn't even realize it & claimed to not see any of this in the report - long story), and Dog knows what would have happened to me had I not a little bit of knowledge, a brain, not being afraid to speak up and ask intelligent questions (like "why does the report say I have a triscuspid aortic valve when I have a mechanical one with swinging doors and the valve that was replaced wasn't even tricuspid in the first place", and "how can a mechanical valve like mine get fatty deposits on it in the first place, isn't it made out of material to avoid that?", and "even if it got deposits how could they calcify in only like 3-4 years?" and regarding the pressure stuff that is a longer story)...
Again was a longer story than all this (and I've mentioned it up here b4), but am just saying keep up what you are doing as far as researching and trying to understand things and asking intelligent questions so that you can make educated decisions, so you have the best shot at having a good outcome in the end.
slipkid
Well-known member
You sir, like me, are a "problem patient"!
Someone with a brain, a scientific background, ability to digest "facts" and analyze what you are being presented with, wanting to ask questions to aid in your understanding and wanting to make educated decisions on medical issues instead of just doing "what you're told to do" by your Doctor who is all knowing and beyond reproach.
(I was actually called a "problem patient" by a horrible Dr who did not like a patient daring to ask him intelligent questions instead of just blindly going along with his nonsense, after which he threw me out of the office....long story..).
W84Me
Active member
- Joined
- Jun 24, 2023
- Messages
- 35
Thank you so much. Your experience is enlightening to all of us.
pellicle
Professional Dingbat, Guru and Merkintologist
Per your questions:
1. How long was the recovery after the surgery? Back to work in 6-weeks. A-OK in 6-months.
2. If you had tissue valve replacement, how long did it last? I was ~55 when my valve was replaced. I did not want a re-operation and chose mechanical. It was a pretty simple choice for me, I've had 5 surgeries and want to avoid more. I had family members on warfarin and knew it wasn't a big deal.
3. If you were in my shoes, which valve option you will prefer? I would like to have as much back to normalcy as possible (including staying fit using weights if possible). We can't make your decision for you. Your "normalcy" is a diseased valve with sudden death in your immediate future...you don't want "back to normalcy." As my pastor, a psychiatrist, says "Normal is a setting on the washing machine."
1. How long was the recovery after the surgery? Back to work in 6-weeks. A-OK in 6-months.
2. If you had tissue valve replacement, how long did it last? I was ~55 when my valve was replaced. I did not want a re-operation and chose mechanical. It was a pretty simple choice for me, I've had 5 surgeries and want to avoid more. I had family members on warfarin and knew it wasn't a big deal.
3. If you were in my shoes, which valve option you will prefer? I would like to have as much back to normalcy as possible (including staying fit using weights if possible). We can't make your decision for you. Your "normalcy" is a diseased valve with sudden death in your immediate future...you don't want "back to normalcy." As my pastor, a psychiatrist, says "Normal is a setting on the washing machine."
slipkid
Well-known member
My washing machine doesn't have that setting. It's pretty much a low cost piece of crap that doesn't hold a candle to my old one that lasted about 30 years and weighed about 2 tons more than this mostly plastic one.
When it comes time to replace this current one I will look for one with a normal setting
pellicle
Professional Dingbat, Guru and Merkintologist
When it comes time to replace this current one I will look for one with a normal setting
user 15848
Liborio
- Joined
- Sep 20, 2015
- Messages
- 286
Either St Jude or OnX are good, OnX designers came from St Jude, so if anything, is an improvement; My Surgeon, #2 in the country told me that the only mech valve he uses is OnX; and that is the one i got, so if anything, he should know what he is talking about more than any one of us here personal opinion. But , do listen to "your" surgeon and cardiologist, they will recommend what they think is best for you; Tissue valve, is just a matter of you having no problems with having 2 or 3 surgeries depending on your age. i choose to have 1 and done.
As per the 1.5-2 range, i tried it for 9 months but it was a lot of stress because can go below 1.5 y one day and you may have an issue, "maybe", so for me the numbers are 2.0 - 2.5; and try to be as close to 2 as i manage, that gives a big range of safe values;
nobog
Well-known member
Well, he doesn't. I have said this before and I will say it again, the surgeon's are very good at anatomy and plumbing things but they know very little about function and details about prosthetic "X". Leaflet function of the SJM is superior to the OnX - but most surgeons are (sadly) overly influenced by the marketing dept of these corporations.
pellicle
Professional Dingbat, Guru and Merkintologist
More than most of us here.
Last edited:
pellicle
Professional Dingbat, Guru and Merkintologist
its sort of logical to me. They have enough to think about with all the hoo har involved in actual surgery without getting geeky about valves.
I know a few mechanical engineers who have specific bents about specific car makes, when pressed they can't justify that either.
For the surgeon simply having a preference is a simple solution, esp when you know that:
- the patients really (by and large) don't have a bloody clue
- no choices on the present mech valve market are bad
- the reality of most research on outcomes lumps all mech valves together anyway
Superman
Well-known member
Surgeons tend to go with what they can get when they need it. That’s why pharmaceutical sales and dme (durable medical equipment) sales pays so well. My neighbor does dme stuff. They use his company’s products because he gets what they need to the OR when they need it. I’m sure they’re not doing their own stress testing to make sure they are only putting in the best stuff.
If they have to call the St Jude rep and the On-X rep is there already, they’re installing On-X.
Or maybe the hospital contracts with one or the other. Or the insurance company has one approved over another.
